母亲照顾大疱性表皮松解症儿童和青少年的经验

Escola Anna Nery Pub Date : 2023-01-01 DOI:10.1590/2177-9465-ean-2022-0231en

Carolina Balestra Silva, Aline Cristiane Cavicchioli Okido, D. Carlos, M. Wernet, N. G. Barbosa

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引用次数: 0

摘要

摘要目的了解和分析母亲对大疱性表皮松解症患儿的护理经验。方法采用半结构化访谈，对来自巴西不同地区的10名患有大疱性表皮松解症的儿童和青少年的母亲进行描述性定性研究，访谈时间为2021年9月至11月，使用谷歌Meet®远程记录。专题分析技术指导了实证材料的鉴赏。结果参与研究的母亲年龄在23岁至53岁之间。有两个类别可以解释母亲的经历:i)诊断的“震惊”和最初的挑战;ii)“停止为他们而活”:家庭日常生活的变化。当她们的孩子被确诊时，母亲们经历了恐惧和不安全感，护理程序，特别是每天的换药，造成了身体和情感上的负担。这些结果可以支持这些家庭的随访，为他们提供护理工具和情感支持。

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Experiences of mothers in the care of children and adolescents with epidermolysis bullosa

Abstract Objective to know and analyze mothers’ experiences in caring for children and adolescents with Epidermolysis Bullosa. Method a descriptive qualitative study was developed with ten mothers of children and adolescents with epidermolysis bullosa from different regions of Brazil using semi-structured interviews recorded remotely using Google Meet® between September and November 2021. The thematic analysis technique guided the appreciation of the empirical material. Results mothers aged between 23 and 53 years participated in the study. Two categories translate the maternal experience: i) the “shock” of the diagnosis and the initial challenges and ii) “Stop living to live for them”: the changes in the families’ daily life. Final considerations and implications for practice mothers experienced fear and insecurity when their child was diagnosed, and the care routine, especially the daily dressing changes, caused a physical and emotional burden. These results can support the follow-up of these families to provide them with care tools and emotional support.

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来源期刊

Escola Anna Nery

自引率

0.00%

发文量

131

审稿时长

49 weeks

期刊介绍： Anna Nery School Journal of Nursing is a vehicle for scientific communication sponsored by Anna Nery School of Nursing, Federal University of Rio de Janeiro, since 1997. The Journal''s mission is publishing an original manuscript related to Nursing, Healthcare and other areas of knowledge whenever there are interfaces in Health and Nursing Science.The journal will accept original manuscripts, developed by quantitative, qualitative, and mixed methods. It is also accepted studies such as reflections, essays, and systematized reviews. All those manuscripts should bring direct or indirect contributions to the historicity and practice of nursing care, to nursing education, to the development of new methodologies and technologies for caring, teaching, and research. It has a special interest in the studies developed with vulnerable populations whose findings directly contribute to broadening the nursing science that underlies ethical and human care.